Up the Down staircase

I've noticed that Caden's development tends to come in big waves with long periods of rest in between. Just when I think he's plateaued, he surprises me with several big achievements at once. And he accomplishes them strongly with no doubt they've been mastered.

At Caden's one month checkup, the pediatrician seemed fine with the fact that Caden was already delayed in some of the very early developmental milestones. I knew I should be patient and accept Caden wherever he is but I also wanted some help. At the time we had not been referred to Early Intervention or any type of therapy. I felt like I was failing my son already.

"He's not smiling yet," I informed the doctor "Well, he kinda smiles when he has gas but that's it."

The doctor looked up from his examination of my baby to ask "And that's not good enough for you?" I could have died right there. I wanted to burst into tears and shrink away. I already felt like a bad mother and didn't need any more help in the inadequacy department, especially from a medical professional.

That night I did cry as I filled in The Tank about the visit. He had also been concerned about Caden not smiling yet and we both felt the doctor's comment as a punch in the gut. I thought we had been pushing for our son to reach higher goals but the pediatrician had made us feel like complainers and parents who would never be pleased instead. I remember standing in the kitchen holding my beautiful baby as we re-evaluated our expectations, tears streaming off my face.

And then Caden smiled. I couldn't believe what I had just seen and told The Tank to get beside me pronto. Sure enough our son smiled again. And again. And again. Suddenly my baby was all smiles. I couldn't get enough of it and we laughed till bedtime.

Caden's first time sitting up, standing, crawling, even walking all happened in a similar manner. We worked on it, waited for it, no results. Almost always he would perform said milestone within a day of me mentioning its absence to a doctor or therapist. It was as if he was waiting for me to make the comment so he could prove me wrong. And when he did conquer a feat, he did it like it he'd been doing it for months. He didn't take one or two steps when he first walked. He zoomed across the room.

One of Caden's current goals is to master steps. He can go up and down with assistance though without alternating legs. He prefers one leg to be in the lead. We have a small stoop under our front door and I have seen him go up and down that single step without assistance, meaning nothing to hold onto, only a handful of times. Bigger steps he looks for a handrail or resorts to crawling up. Forget going down unless he's got a firm grip on both sides. The Tank had recently asked me if I thought the physical therapist was making this enough of a priority in their sessions. Caden had been climbing steps with assistance for nearly 9 months now and it seemed he should be able to do it on his own by now.

Yesterday after I picked Caden up from school, we took the 2 flights of stairs down to the ground floor. He was holding the handrail in one hand, my hand in the other. He steps down each time with the left leg first. The usual MO. His classmates seem to speed past us as they rush out of the building. But I've learned patience and know Caden is doing the best he can. We'll get there when we get there.

Once we hit the parking lot, we make a right turn to go up a small flight of 5 stairs to a secondary lot. The main parking area had been full so I had to park along the side of the building. Caden spots our car up the small slope and takes off, letting go of my hand. Before I know it, he has climbed up all 5 stairs. No handrail, no assistance, no problem. I am jumping up and down with glee and don't care who sees me. I give my amazing son a high five and then much to his irritation, scoop him up for a big kiss. "I am so proud of you, Caden!" He looks up and signs "more". He wants more steps. He knows he's got it down now and wants to show off his new skill. And true to form, he ascends the stairs like he's been doing it since he could walk. Wait till The Tank sees this. I love when Caden makes us eat our words!

What Caden did at school today

It is hard for me as a mother to not know exactly what happens during Caden's school mornings. He tries to talk but his words are very mumbled so he relies mostly on sign language. When I pick him up, I always ask him what he did at school today but he has never been able to sign about past events, or future ones. His signing is usually descriptive about what is currently happening , or what he wants right now. I've tried to ask him "Did you paint today? Did you have fun today? Did you play with Katie today?" but he answers everything with an enthusiastic "Yeah!" I could be asking "Did you build a rocket ship today? Did you snack on caviar and Brie? Did you shoot lasers out your fingers?" and still I would get "Yeah!"

His typical preschool posts the daily events on a dry erase board but I always wonder how much Caden participated. Did he really eat marshmallows? The special education preschool sends home a check list on what activities he performed and which classmates he played with but there are no descriptives. When it says they built a class snowman, I'm certain they weren't outside in the snow. What does "class snowman" mean? I've usually calmed my trepidation with the knowledge that whatever Caden does at his schools, he loves it. He is very excited to go to either facility. That must do.

When I picked him up this morning and as I zipped up his coat, I did the standard "What did you do at school today? Did you have fun?" To my surprise, Caden signed "sleep" and pointed to one of his fellow classmates.

"Oh, was she sleeping?" I ask. Caden points to himself and again signs "sleep".

"So you were both sleeping?" I question.

"Yeah!" he exclaims. They don't do nap time at this school. Maybe it was part of a story or special activity. Maybe he's just being silly. I turn to the classmate.

"Were you sleeping?" She smiles and nods her head. Then we are approached by the little girl that gave Caden a piece of her artwork last week. She wants to hug him goodbye. Caden does the same pointing to her and himself while signing "sleep." This second girl also confirms that they were sleeping. Now I must know what happened. Caden has never spontaneously told me about his school day. Is he actually telling me about something they did or merely making up a story? I re-enter the classroom and approach the teacher.

"Were they pretending to sleep today?" I ask her. She looks a little puzzled at first and then recalls that Caden was under the table with 3 of his female classmates. She thought they were pretending to camp but they must have been pretending to sleep. "What a smart boy!" she says and gives him a big hug. I feel nothing short of blown away.

Later when I recount the story, The Tank is proud of his son's Casanova stylings in being under the table with 3 girls. But I am less impressed with what Caden did at school today compared to what he learned.

Today Show tissue-grabber

http://today.msnbc.msn.com/id/26184891/vp/29030653#29030653

Watch the video called "Player with Down Syndrome wows fans". Man, I would give anything for Caden to have an experience and friends like this in high school.

Caden's first snowman

Lucky

"You are lucky". Short and sweet. That was all the woman behind us in the grocery store check-out said to me. No explanation given from the smiling stranger.

Was I the lucky one millionth customer served? Was I lucky to get the last package of Dunkin Donuts Vanilla coffee? Was I lucky to not get a cart with a screwy convulsing wheel? No, I knew she was referring to my beautiful rockstar child seated in the grocery cart at the end of the lane. When I've heard similar statements in the past, it's usually followed by the person sharing how they garnered an appreciation for a 47th chromosome like "I have a grandson with Down syndrome" or "I teach special education". But this woman offered nothing further. She was gazing at Caden still so I too turned to join in her admiration.

And there he was in all his glory. Suffering from a feverish cold with snot running out of his nose, both hands shoved into his mouth so he could chew his thumbs (I think this helps when his ears hurt), droning "aaa, aaa, aaa, aaa" while kicking the plastic shopping bags hanging beside him. I wondered how many people must be questioning why I had him out of the house but after 2 days holed in from the weather, we were out of the basics. I searched for a tissue wishing he was feeling better to appreciate this compliment.

Caden spotted us eyeing him and his face lit up with a brilliant smile as he waved. Then the cashier said "awwww" which sent him into high ham mode. He double-waved to both the shopper behind me and the cashier joined by a flirty sideways "hiiiiiiii!" Then he brought both hands up to his mouth and blew them simultaneous kisses, which of course made his new fans melt. "He's so cute!" "I want to take him home". Now the lady checking out beside us is joining in with "What a darling!" as Caden reached out to hold her hand. Just like that, their hearts were stolen. To seal the deal, he turned back to me with a big you're-still-my-favorite hug and a gentle stroke of my hair. Oh, how I love this boy.

I turned back to the woman waiting in line. She was clutching her chest with both hands. "Yes," I said, "I am lucky."

How's this for irony?

Caden currently starts each day by dancing to a couple songs usually accompanied by his jingle stick. Before breakfast or Elmo, he's signing for "music" and "guitar". He loves anything with a fast hard-pumpin' blues sound. Personally I find it hard to jam to my best ability before a shot of coffee but Caden seems to wake up raring to go. Coincidentally, his absolute favorite band goes by the name of.... Downchild.

What to say to a pregnant woman

The worst pregnancy advice is nearly always unsolicited. I heard the generic stuff: at least 100 solutions for morning sickness, herbal remedies to ease the crying, teas for sleeplessness, how to pamper The Tank so he doesn't feel forgotten (are you kidding me?). There were the comments on my "cute" tummy bulge or the glance to my behind followed with "Don't worry, you'll lose that after the baby is born". And apparently being pregnant is open season for any ol' stranger to ask how much weight I'd gained or if I planned to breastfeed. Then there were all the people that felt the need to touch my belly, or bless it. I even had one woman tell me my belly had a colorful but very peaceful aura around it; could she meditate with it? Yeah, let me get back to you on that one.

A lot of women wanted to relive their pregnancy with me: it was the best time of my life, I loved being with child, enjoy it, it goes so fast. And a small hard-core group wanted to share every gory detail of their incredibly difficult birthing experiences. Thanks for the warning that I'm riding an express train straight to Worstpainimaginableville.

I had people ask if it was a boy or girl and then declare it was wrong to find out the sex of the baby in advance because some things should be a surprise. You want a surprise? How about the health of the baby? It truly is a miracle that should not be taken for granted when any baby is born healthy. Wondering whether my son would be born with hydrocephalus, a cardiac calcification, kidney nephrosis, et al. was enough of a surprise for me. In fact, I had so many unknowns happening prenatally that that one known, my baby was a boy, gave me something to hold onto.

Most of these people did not know my prenatal diagnosis. I know that each and every one of them meant well and I thanked them for their thoughts. But the worse advice I received was actually from a mother to a special needs child who did know Caden's diagnosis. She told me, "Have another child right away." Here I wasn't even finished with this pregnancy and the baby was already being written off. It suggested that I wouldn't be happy with him and should pin my big dreams on the next one. It was completely devoid of hope. There was no herbal remedy in existence to stop the tears I cried over her words. In her defense, that was what worked for her and she was sincerely trying to help. But it certainly didn't feel appropriate to share that with a woman who still had 4 more months in her pregnancy. I hadn't had a baby shower yet and her words left me wondering if I should even bother.

I look back now and appreciate all the concern expressed to me. But I heard enough of it. I didn't want any more counseling, advice, warnings, guidance, maternal bonding or sympathy. I wanted congratulations.